Good social connections are proposed to positively influence the course of cognitive decline by stimulating cognitive reserve and buffering harmful stress-related health effects. Prior meta-analytic research has uncovered links between social connections and the risk of poor health outcomes such as mild cognitive impairment, dementia, and mortality. These studies have primarily used aggregate data from North America and Europe with limited markers of social connections. Further research is required to explore these associations longitudinally across a wider range of social connection markers in a global setting.

We examined the associations between social connection structure, function, and quality and the risk of our primary outcomes (mild cognitive impairment, dementia, and mortality).

Individual participant-level data were obtained from 13 longitudinal studies of ageing from across the globe. We conducted survival analysis using Cox regression models and combined estimates from each study using two-stage meta-analysis. We examined three social constructs: connection structure (living situation, relationship status, interactions with friends/family, community group engagement), function (social support, having a confidante) and quality (relationship satisfaction, loneliness) in relation to the risks of three primary outcomes (mild cognitive impairment, dementia, and mortality). In our partially adjusted models, we included age, sex, and education and in fully adjusted models used these variables as well as diabetes, hypertension, smoking, cardiovascular risk, and depression.

In our fully adjusted models we observed: a lower risk of mild cognitive impairment was associated with being married/in a relationship (vs. being single), weekly community group engagement (vs. no engagement), weekly family/friend interactions (vs. not interacting), and never feeling lonely (vs. often feeling lonely); a lower risk of dementia was associated with monthly/weekly family/friend interactions and having a confidante (vs. no confidante); a lower risk of mortality was associated with living with others (vs. living alone), yearly/monthly/weekly community group engagement, and having a confidante.

Good social connection structure, function, and quality are associated with reduced risk of incident MCI, dementia, and mortality. Our results provide actionable evidence that social connections are required for healthy ageing.

The recognition of dementia as a multifactorial disorder encourages the exploration of new pathways to understand its origins. Social health might play a role in cognitive decline and dementia, but conceptual clarity is lacking and this hinders investigation of associations and mechanisms. Social health might provide a new perspective on social connectedness. The objective is to develop a conceptual framework for social health to advance conceptual clarity in future studies and to identify potentially modifiable risk and protective factors in the “Social Health And Reserve in the Dementia patient journey (SHARED)” project.

The methods include the process of building the conceptual framework. We used the following steps: underpinning for concept advancement, concept advancement by the development of a conceptual model, and exploration of its potential feasibility.

Underpinning of the concept drew from a synthesis of theoretical, conceptual and epidemiological work, and resulted in the definition of social health as well-being that relies on capacities both of the individual and the social environment. In the conceptual framework the abstract definition has been elaborated into more precisely defined domains at both the individual and the social environmental levels. This allowed to identify domain related social health characteristics or markers in epidemiological data bases and to investigate associations between these markers and cognitive decline and dementia. The associated social health markers represent potentially modifiable risk and protective factors. Examples are “social engagement” in the participation domain at the individual level, and “frequency of contact” in the structure domain, “exchange of support” in the function domain and “loneliness” in the appraisal domain at the environmental level. The conceptual framework facilitated identification of domain related markers in the SHARED project, thus showing its potential feasibility.

The conceptual framework provides guidance for future research and facilitates identification of potentially modifiable risk and protective factors. These may shape new avenues for preventive interventions. We highlight the paradigm of social health in dementia as a priority for dementia research.

Dementia negatively affects the interaction with the social environment by changes in cognition and behavior. On the other hand, the social network may be an important enabler for persons with dementia to make use of their remaining capacities. Mechanisms driving and explaining these interactions are unknown. We aimed to explore how the social environment impacts the functioning and well-being of a person with dementia.

We performed a qualitative case study, conducting semi-structured interviews. We used the grounded theory approach, as defined by Strauss and Corbin, including alternate data collection and analysis. Per case, the person with dementia, the primary caregiver, significant kin or non-kin network member and the primary healthcare professional were interviewed individually. The interviews were conducted using a topic guide, which was adjusted according to preliminary analyses. Transcripts were coded by two researchers independently, where after axial codes, categories were formulated and a theory including a core phenomenon was identified with the entire research team.

Analyses revealed ‘creating a safe environment’ as a core phenomenon. This relates to encouragement and the created anchor points of the environment to compensate for the inevitable feelings of loss of control that persons with dementia experience. The ways safety is created include active acts of involvement and participation, trust, humor, reciprocity, appreciation and shared experiences. Suspicion, loss of initiative by the person with dementia and the inability to act and correcting by the environment were identified as major challenges to creating a safe environment.

A safe and supporting environment enables persons with dementia to use their remaining capacities. Active participation, trust, humor and reciprocity are key elements to create such a safe environment. These findings show that basic needs of persons with dementia for daily functioning and well-being are similar to these of all humans.

Besides aspects of physical and mental health and quality of life aspects the concept of social health is getting increasing attention in dementia research. Current research has led to a new umbrella concept of social health and first studies show relationships between social health markers and cognitive decline and dementia. But so far, no general overview exists how to measure social health in empirical studies.

The objective of this study therefore is to provide a systematic overview of instruments measuring aspects of social health and proposing a classification based on the new umbrella concept of social health.

Following the PRISMA 2020 guidelines a systematic review was conducted. The online search covered the databases PubMed/MEDLINE, PsychINFO, CINAHL within a publication period from 1st January 2000 till 15th October 2020 for English publications. To classify instruments a new multidimensional framework of social health was used.

A total of 150 studies with 68 single instruments were included into the study. A broad range of study types was covered (i.e., feasibility studies, cross-national panel studies) from all over the world, with the majority of studies being conducted in the USA. Most of the described instruments consist of self-report measures, but also proxy and hybrid tools were found. The length of the instruments in terms of the number of single items ranged from 3-126 items, with a median length of 13 items. On the individual level of social health with the three domains capacities, autonomy and social participation we classified 42 instruments and on the social environment level with the three domains structure, functions and appraisal we classified 53 instruments. A large part of the identified instruments only addresses single aspects of social health and does not address the multidimensionality of the concept.

A structured overview of measures related to the conceptual framework of social health can help develop appropriate interventions for people with dementia and improve the conditions for living well with dementia. Furthermore, the creation of new standardized and terminologically consistent measures of social health is one of the tasks for future research in the field of social health.

The coronavirus disease-2019 (COVID-19) pandemic and accompanying lockdown restrictions impacted social life significantly. We studied associations of sociodemographic factors, mental and social health markers, and brain structure with social health trajectories during the COVID-19 pandemic.

Prospective longitudinal population-based cohort study.

Community-dwelling inhabitants of Rotterdam, the Netherlands.

Repeated questionnaires including questions on social health were sent to Rotterdam Study participants from April 2020 onwards. Social health data at study baseline were available for 5017 participants (mean age: 68.7 ± 11.3; 56.9% women).

Determinants were assessed in routine Rotterdam Study follow-up (1990–2020), including global brain volumes in a subset of participants (N = 1720). We applied linear mixed models and generalized estimating equations to quantify associations between determinants and trajectories of loneliness, perceived social isolation and social connectedness over three time points from April 22nd to July 31st 2020.

Loneliness prevalence was 27.9% in April 2020 versus 12.6% prepandemic. Social isolation (baseline mean 4.7 ± 2.4) and loneliness scores (baseline mean 4.9 ± 1.5) decreased over time, whereas social connectedness trajectories remained stable. Depressive symptoms, female sex, prepandemic loneliness, living alone, and not owning a pet were independently associated with lower social connectedness and higher social isolation and loneliness at COVID-19 baseline, but recovery of social health was similar for all determinants. Larger intracranial volume was associated with higher social connectedness.

Despite baseline differences for specific determinants, older adults showed similar recovery of loneliness and social isolation alongside stable social connectedness over time during the pandemic. Social health is multidimensional, especially during a global health crisis.

Inclusion is taken as a natural situation, until feelings of exclusion are perceived. Social relations are for human beings like water to plants. Social health has been defined in 1946 by the WHO as the social domain of health. It is an umbrella concept that covers how the individual relates to his or her social environment and vice versa. Social inclusion is a key marker or characteristic of social health, represented by specific markers such as participation in leisure activities.

We aim to study theoretical mechanisms and social health markers relevant to inclusion and cognitive functioning.

identification of mechanistic pathways and systematic review on the relationship between combinations of social health markers and cognitive functioning and dementia in healthy older adults.

We combined neurobiological and social pathways to guide our study. The search for social health markers yielded 4332 potentially relevant citations. Eleven articles were eligible for inclusion. Combining social health marker reflecting social exclusion (e.g. social isolation, financial deprivation, living alone and lacking basic social rights) revealed a significant risk factor for both the development of dementia and reduced cognitive functioning. A combination of a high educational level, high occupational complexity and participating in leisure activities was protective for good cognitive functioning and dementia.

Several social health markers are a pathway to social inclusion and to cognitive functioning, with markers reflecting exclusion being a risk factor, while those reflection inclusion are associated with protective effects. These findings open doors for interventions using the potential of social health in prevention of cognitive decline and dementia.

Sense of competence defines a caregiver’s feeling of being capable to manage the caregiving task and is an important clinical concept in the caregiving literature. The aim of this review was to identify the factors, both positive and negative, associated with a caregiver’s perception of their sense of competence.

A systematic review of the literature was conducted, retrieving both quantitative and qualitative papers from databases PsycINFO, CINAHL, EMBASE, and Medline. A quality assessment was conducted using the STROBE and CASP checklists, and the quality rating informed the inclusion of papers ensuring the evidence was robust. Narrative synthesis was employed to synthesize the findings and to generate an updated conceptual model of sense of competence.

Seventeen papers were included in the review, all of which were moderate to high quality. These included 13 quantitative, three mixed-methods and one qualitative study. Factors associated with sense of competence included: behavioral and psychological symptoms of dementia (BPSD), caregiver depression, gratitude, and the ability to find meaning in caregiving.

The results of this review demonstrate that both positive and negative aspects of caring are associated with caregiver sense of competence. Positive and negative aspects of caregiving act in tandem to influence caregiver perception of their competence. The proposed model of sense of competence aims to guide future research and clinical interventions aimed at improving this domain but requires further testing, as due to the observational nature of the include papers, the direction of causality could not be inferred.

Dementia, even more than cancer, demands long-term care. While in Indonesia cancer is accepted as a disease requiring caregiving, dementia is still considered "a normal condition." These differences might affect the experiences of caregivers, especially those relating to social health, the subject of our study. We aim to describe and compare the lived experiences of family caregivers of patients with cancer (PWC) with those of patients with dementia (PWD) in Yogyakarta, Indonesia, and to explore the role of their social health in these experiences.

A qualitative design was applied. In-depth face-to-face interviews were conducted with PWC and PWD caregivers in two outpatient clinics of a tertiary hospital. The constant comparative method was applied to analyze the data that were interpreted using the concept of social health to explore the experiences of the caregivers. We used Atlas.ti software.

Three themes were identified: problems with caregiving, dealing with problems, and beliefs in caregiving. We found more similarities than differences in the experiences of caregivers in both groups. Half of the categories were related to social health: challenges, consequences, hiding, social support, and the caregiver's approach. The organization of dementia care is characterized by simplicity and direct ties between medical specialists, PWD, and caregivers, whereas cancer care encounters coordination problems.

Family caregivers of both groups mostly had similar experiences of the caregiving process. Gaining a better understanding of the specific experiences of caregivers, and their social health, opens new avenues for interventions to improve their quality of life.

Family caregivers of people living with dementia can have both positive and negative experiences of caregiving. Despite this, existing outcome measures predominately focus on negative aspects of caregiving such as burden and depression. This review aimed to evaluate the development and psychometric properties of existing positive psychology measures for family caregivers of people living with dementia to determine their potential utility in research and practice.

A systematic review of positive psychology outcome measures for family caregivers of people with dementia was conducted. The databases searched were as follows: PsychINFO, CINAHL, MEDLINE, EMBASE, and PubMed. Scale development papers were subject to a quality assessment to appraise psychometric properties.

Twelve positive outcome measures and six validation papers of these scales were identified. The emerging constructs of self-efficacy, spirituality, resilience, rewards, gain, and meaning are in line with positive psychology theory.

There are some robust positive measures in existence for family caregivers of people living with dementia. However, lack of reporting of the psychometric properties hindered the quality assessment of some outcome measures identified in this review. Future research should aim to include positive outcome measures in interventional research to facilitate a greater understanding of the positive aspects of caregiving and how these contribute to well-being.

Decision making is an important part of managing one's life with dementia. Shared decision making is the preferred way of involving people in decisions. Our study aimed to describe the challenges of shared decision making in dementia care networks.

A multi-perspective qualitative study using face-to-face interviews with 113 respondents in 23 care networks in the Netherlands consisting of 23 people with dementia, 44 of their informal caregivers, and 46 of their professional caregivers. The interview guide addressed the decision topics, who were involved in the decision making and their contributions to the decision making. We used content analysis to delineate categories and themes.

The themes and categories that emerged are: (1) adapting to a situation of diminishing independence, which includes the continuous changes in the care network, resulting in shifting decision-making roles and the need for anticipating future decisions; and (2) tensions in network interactions which result from different perspectives and interests and which require reaching agreement about what constitutes a problem by exchanging information in the care network.

The challenges in dementia care networks relate to all dimensions of social health. They have implications for a model of shared decision making in dementia care networks. Such a model requires flexibility regarding changing capabilities to preserve the autonomy of the person with dementia. It needs working towards a shared view about what constitutes a problem in the situation. It asks for professionals to advocate for the involvement of people with dementia by helping them participate in ways that strengthen their remaining capacities.

In dementia, cognitive and psychological disorders might interfere with maintaining social interactions. We have little information about the nature of these interactions of people with dementia in nursing homes. The aim of this study is to investigate social interactions between people with dementia and to validate an observation grid of them.

Fifty-six institutionalized people with dementia took part in this study. Residents had not met beforehand and were divided into groups of four to six. Social behaviors were videotaped and analyzed by two independent raters with an observation grid measuring frequency of occurrence. The ethogram was the conceptual tool that became the Social Observation Behaviors Residents Index (SOBRI).

Two-thousand-six-hundred-seventy instances of behavior were collected. Behaviors directed at others represented 50.90% and self-centered behaviors 47.83%. No negative behaviors were observed. Principal Component Analysis (PCA) was used to validate the SOBRI and showed two components of social behaviors that explained about 30.56% of the total variance: social interactions with other residents (18.36%) and with care staff (12.20%). The grid showed a good internal consistency with a Cronbach's α of 0.90 for the first component and 0.85 for the second one.

The SOBRI presents robust psychometric validity. This pilot study indicates that people with dementia spontaneously interact with other residents. These results contradict the stigma of non-communication and the stereotypes about dementia. More studies and validations are needed to contribute to the knowledge of social interactions in dementia.

Children of patients with young onset dementia (YOD) who are confronted with a parent who has a progressive disease, often assist in caregiving tasks, which may have a great impact on their lives. The objective of the present study is to explore the experiences of children living with a young parent with dementia with a specific focus on the children's needs.

Semi-structured interviews with 14 adolescent children between the ages of 15 and 27 years of patients with YOD were analyzed using inductive content analysis. Themes were identified based on the established codes.

The emerging categories were divided into three themes that demonstrated the impact of dementia on daily life, different ways of coping with the disease, and children's need for care and support. The children had difficulties managing all of the responsibilities and showed concerns about their future. To deal with these problems, they demonstrated various coping styles, such as avoidant or adaptive coping. Although most children were initially reluctant to seek professional care, several of them expressed the need for practical guidance to address the changing behavior of their parent. The children felt more comfortable talking to someone who was familiar with their situation and who had specific knowledge of YOD and the available services.

In addition to practical information, more accessible and specific information about the diagnosis and the course of YOD is needed to provide a better understanding of the disease for the children. These findings underline the need for a personal, family-centered approach.

Little is known about care needs in young-onset dementia (YOD) patients, even though this information is essential for service provision and future care planning.

We explored: (1) care needs of people with YOD, (2) the level of agreement within patient-caregiver dyads on care needs, and (3) the longitudinal relationship between unmet needs and neuropsychiatric symptoms.

A community-based prospective study of 215 YOD patients-caregiver dyads. Care needs were assessed with the Camberwell Assessment of Need for the Elderly. The level of agreement between patient and caregivers’ report on care needs was calculated using κ coefficients. The relationship between unmet needs and neuropsychiatric symptoms over time, assessed with the Neuropsychiatric Inventory, was explored using linear mixed models.

Patients and caregivers generally agreed on the areas in which needs occurred. Only modest agreement existed within patient-caregiver dyads regarding whether needs could be met. Patients experienced high levels of unmet needs in areas such as daytime activities, social company, intimate relationships, and information, leading to an increase in neuropsychiatric symptoms.

Our findings indicate that in YOD, there are specific areas of life in which unmet needs are more likely to occur. The high proportions of unmet needs and their relationship with neuropsychiatric symptoms warrant interventions that target neuropsychiatric symptoms as well as the prevention of unmet needs. This underlines the importance of the periodic investigation of care needs, in which patient and caregiver perspectives are considered complementary.